My son Brody is unpredictable and has no danger awareness due to an undiagnosed genetic condition
Mum to Brody & Sydney, lover of sleep and eating bad things. Brody has an undiagnosed genetic condition, GDD, autism, epilepsy, hypotonia, hypermobility...and the best smile EVER. I blog at Brody, Me & GDD to keep sane & because it's good to get it all out (& even better when others "get it"). Also seen tirelessly campaigning for Changing Places toilets and working as PAMIS Changing Places Campaign Co-ordinator in Scotland. Website: www.brodymeandgdd.com
My Daughter Is Neuro-Typical. My Son Isn't. I Never Want To Take For Granted How Easy She Is To Parent
Simple things like watching them patiently stand next to the car before getting in. Walking around a supermarket. Sitting in a cafe. Playing in a park
31/05/2018 08:05 BST
I don’t know who I was trying to convince - myself or my audience?
17/05/2018 17:10 BST
There are so many issues that affect the disabled community in the UK.
27/03/2018 11:24 BST
Sometimes when I’m feeling sad about the cards that Brody has been dealt, I press my face against his, close my eyes and
15/01/2018 11:32 GMT
Despite all of the risks associated with epilepsy, SUDEP has never been discussed with us by any of Brody's paediatricians. I found out what it was in a leaflet that was handed to us when he was diagnosed. It was briefly mentioned on a page, almost as though it was an afterthought.
31/10/2017 11:35 GMT
To Syd, Brody is Brody. She accepts him for who is he - her brother. And in a world where we really should just embrace differences and celebrate them, that's a beautiful thing. Because sadly this isn't always the case.
20/10/2017 13:53 BST
This time, there would be no follow up until preschool. There would be no referrals made. There would be no appointments to health professionals that I hadn't heard of. And there would be no confusing abbreviations thrown my way, which of course later would become part of my everyday vocabulary.
05/09/2017 13:16 BST
I can honestly say that I've lost count of the number of times I have changed my son Brody's nappy in our car boot. Trying to shield him from passers-by, some of whom almost tut at the fact that I'm doing it. <em>Like I want to be doing it</em>.
25/08/2017 15:20 BST
<img alt="everybody banner" src="http://i.huffpost.com/gen/5399116/original.jpg" width="300" height="35" /> Although, I wish so much Brody that we could have walked that path to your local school together, I know that your new school will take great care of you. I know that you'll meet lots of other boys and girls just as special as you are. And I know that you will continue to develop and amaze us - taking everything at your own pace, surrounded by love from people who care.
21/08/2017 12:04 BST
<img alt="everybody banner" src="http://i.huffpost.com/gen/5399116/original.jpg" width="300" height="35" /> Being a parent - and being a parent to a child with disabilities more so - scares me at times. I've always been a worrier, but these days I worry so much more. Because I love both of my children so much. And when it comes to my son Brody, I feel a never ending loss of control over so many things.
28/07/2017 14:50 BST
<img alt="everybody banner" src="http://i.huffpost.com/gen/5399116/original.jpg" width="300" height="35" /> Unfortunately, parents also have to battle and beg local services for help and equipment and, although personally to date, we've been very fortunate with our local services, I am well aware from friends and social media how the services you receive are somewhat a postcode lottery.
10/07/2017 14:18 BST
<img alt="everybody banner" src="http://i.huffpost.com/gen/5399116/original.jpg" width="300" height="35" /> There are so many things that I've learned in the five years that our son Brody has been in our lives. Although there have been more good times than bad, a lot of things I've learned have chipped away at me. Not because of him. He is perfectly imperfect after all. Simply because of the way the world works - people, businesses - and my non-stop worrying mum brain.
04/07/2017 08:01 BST
That's not easy to come to terms with. I love Brody with all my heart and I know that everything happens for a reason. But sometimes I wish I knew what that reason was. No diagnosis means no prognosis after all. Still, having others to talk to who can relate really helps. It can make you feel less isolated in a world of unknowns.
13/06/2017 13:22 BST
My friend and I often joke that if we were entrepreneurial enough, we'd set up a store for the disabled community with an array of products at affordable prices. Someone is missing a trick! There are so many products not on store shelves that I know would sell! And why are we so often ripped off?
22/05/2017 14:30 BST
Laughing was never something I ever associated with seizures. Then late one night when I was heavily pregnant with our daughter, Brody was asleep next to me and began laughing hysterically. I turned round to face him and he started having a clonic tonic seizure (I miraculously managed not to go into labour).
03/05/2017 12:55 BST
Or at least if they don't know the answers straight away, they will in the end. It's not easy to process the reality that they can't always figure things out. That there are unknowns and sometimes - no matter how many tests - some syndromes are so rare they are a needle-in-a-haystack hard to find.
28/04/2017 11:26 BST
If you're walking a similar parenting path to mine, you've quite possibly heard the saying: "<em><strong>you meet one person with autism; you meet one person with autism</strong></em>". Sometimes I think that only those who <em>really know</em> someone with autism get<em> how little</em> others understand this.
19/04/2017 16:18 BST
But it's also oh so bittersweet, like so many things, because I think of how easy she has it compared to our five year old son, Brody, who struggles to tell us what he wants constantly because of a learning disability and autism.
16/03/2017 16:48 GMT
I won't give up campaigning for my child to have the basic human right of access to a toilet when we're out and about. Why should he be excluded? Why shouldn't our family be welcomed everywhere like all other families?
07/03/2017 16:41 GMT
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